Annual general meetings

2015

2014

2013

Earlier years

Network steering group

The network steering group oversees the management and governance of the network. It meets 3-monthly in various locations throughout the East Midlands, East of England and South Yorkshire. The group is comprised of the following people:

Chairperson (specialist commissioner) - Dr Owen Jones

Network lead clincian - Dr Martin Christian

Network lead nurse - Ms Shelley Jepson

Dietetian - Mrs Pearl Pugh

Network administrator - Mrs Judith Hayes

Link paediatrician for the East Midlands - Dr Simon Rhodes

Link paediatrician for the East of England - Dr Mona Aslam

Link paediatrician for South Yorkshire - Dr Gail Moss

Local link nurse - currently vacant

Pharmacist - Mr Andrew Wignell

Psychosocial links - Mrs Suzanne Batte and Ms Dorro Hackett

Parent representatives

Network steering group documents

Network steering group minutes

EMEESY children's hospital support

A meeting to discuss nephrology support and service development for the large children's hospitals within EMEESY was held at Nottingham Belfry Hotel on 7 April 2014. Minutes and copies of individual presentations are below:

Meet the Nottingham team

What's a multi-disciplinary team?

Caring for children with kidney disease requires a large team of people with different skills.

This is known as a multi-disciplinary team.

These are some of the team members who will care for your child.

You can read about the different staff and the jobs they do below.

Doctors

Medical consultants are known as nephrologists and surgical consultants are known as urologists. The consultant nephrologists who work on the renal and urology unit at Nottingham Children's Hospital are:

Dr Jonathan Evans

Dr Evans was appointed as a consultant in 1993. He is currently also the Divisional Director for Family Health at Nottingham University Hospitals NHS Trust. His special area of interest is in children with wetting. Dr Evans is the link paediatric nephrologist for the shared care clinics in Norwich, Great Yarmouth and Kings Lynn.

Dr Farida Hussain

Dr Hussain was appointed as a consultant in 2003. She is currently the lead consultant for the children's kidney unit. Dr Hussain is the link paediatric nephrologist for the shared care clinics in Kings Mill and Derby Hospitals. She also goes to Leicester as part of the rotation for which Dr De is the lead consultant.

Dr Martin Christian

Dr Christian was appointed as a consultant in 2004. He is currently the lead consultant for the EMEESY network. He has an interest in nephrotic syndrome and tubular disorders. Dr Christian is the link paediatric nephrologist for the shared care clinics in Rotherham, Doncaster, Bassetlaw, Cambridge (which he shares with Dr Kim) and West Suffolk Hospital.

Dr Meeta Mallik

Dr Mallik was appointed as a consultant in 2008. She is the lead consultant for antenatal nephrology. She shares the support for Leicester Children's Hospital renal services with Dr De and Dr Hussain. She is the link paediatric nephrologist for Kettering.

Dr Andrew Lunn

Dr Lunn was appointed as a consultant in 2010. He has an interest in urinary tract infections and is also the research lead for the unit. Dr Lunn is the link paediatric nephrologist for Sheffield, Barnsley and Chesterfield.

Dr JJ Kim

Dr Kim trained in paediatric nephrology at Evelina Children's Hospital and Great Ormond Street Hospital for Children in London. He joined the team as a new consultant in January 2016. He is interested in transplantation. He is the link nephrologist for all the Lincolnshire clinics (Pilgrim, Lincoln and Grantham), Hinchingbrooke, Cambridge (which he shares with Dr Christian) and Peterborough.

Dr Sudarsana De

Dr De was part of the EMEESY consultant team in 2013 covering maternity leave. She joined again as a locum consultant in May 2016 to develop more integrated services with Leicester Children's Hospital and in May 2017 has been appointed as a consultant paediatric nephrologist. Dr De will spend several weeks in Leicester but will also be part of the Nottingham on call rota and have clinics in Nottingham.

Surgeons

Mr Manoj Shenoy

Mr Manoj Shenoy (FRCS, FRCS Paed Surgery, FEAPU) trained in Bombay, Birmingham Children’s Hospital, Nottingham and Great Ormond Street Hospital and was appointed as a consultant in Nottingham in 2004. His special interests include hypospadias, reconstructive urology, stone surgery, DSD and minimally invasive surgery.

He is currently the Chair of the surgical CSU in Nottingham.

He is a member of the British Association of Paediatric Urologists and the European Society of Paediatric Urology.

Mr Alun Williams

Mr Alun Williams (FRCS Paed Surgery) trained in Oxford, Leeds and Nottingham and was appointed as a consultant paediatric urologist in Nottingham in 2006. His special interests include kidney transplantation (paediatric and adult, including living donor transplantation), neuropathic and adolescent urology.

He is a member of the British Association of Paediatric Urologists, the American Urological Association and the British Transplantation Society.

Mr Williams does clinics and operating sessions in Derby as well as Nottingham.

Mrs Nia Fraser

Mrs Nia Fraser (FRCS Paed Surgery) was apointed as a consultant in 2008. Mrs Fraser does clinics and operating sessions at Kings Mill Hospital as well as Nottingham and also does 2 clinics a year at Lincoln County Hospital.

Mr Bharat More

Mr Bharat More was appointed as a consultant in 2016. Mr More does clinics and operating sessions in Derby as well as Nottingham.

The Nottingham paediatric surgeons also do clinics at Burton-on-Trent Hospital as part of a rotation.

Nurses

Renal team nurses

Several nurses with different areas of responsibility make up the renal nursing team. As well as having a responsibility for a particular area within nephrology, many also work sessions in the haemodialysis unit. In doing this they maintain their haemodialysis skills to be able to provide a 24/7 on-call rota to provide an acute haemodialysis service and support for hospital-based nurses caring for children and babies receiving acute peritoneal dialysis.

Shelley Jepson is the lead nurse. She is the line manager for the renal nurses, the urology nurses and the ward nurses. She is also responsible for nursing and governance issues for the EMEESY network.

Kim Helm is the clinical nurse specialist for transplantation. She helps prepare children and families for transplantation and looks after children who already have transplants.

Diane Blyton is the renal nurse educator. In this post she is responsible for providing renal education for all new nurses on ward E17. She has also developed an on-line paediatric renal nursing module for the University of Nottingham.

Sharon Mould supports Roy Connell in looking after children on peritoneal dialysis. She also has responsibility for children who have gastrostomy buttons.

Kate Baker is responsible for children with chronic kidney disease. She particularly works with children pre-transplant who are undergoing tests to be able to receive a transplant and supports Kim in looking after children post-transplant in addition.

Urology nurses

Chris Rhodes is the clinical nurse specialist and senior nurse in paediatric urology. She is supported by Gill Young, Caroline Ward and Emma Gamble. More about the urology nurses can be found on the urology nurse pages.

Dietitians

The dietetic service provided to the paediatric renal unit is staffed by 2 (1.6 WTE) specialist renal dietitians, Ruth Prigg and Emma Kelly (currently on maternity leave). Pearl Pugh is now studying for a PhD but is currently providing cover one day a week. During an average year the dietitians see approximately 180-200 patients (70 new patients) requiring 1500 total contacts. Their work includes

- there are dietitians present at the two weekly CKD outpatient clinics on a Tuesday and Thursday mornings.

Specialist paediatric renal dietitians attend local shared-care clinics where possible and aim to attend a clinic at each centre once or twice yearly. Telephone support is available for all shared care clinics throughout the year, either in liaison with the local dietitian or directly with patients and their families.

Dietetic intervention can take the form of nutritional assessment and analysis to optimise growth and correct electrolyte imbalance, education and support to manage special renal diets, oral calorie supplementation, gastrostomy, nasogastric tube feeding and parenteral nutrition.

We have a Feeding Support Group that runs periodically in response to the patient/carers needs. This group provides the opportunity for patients and carers to share experiences and support each other with the joys and challenges of living with a renal condition.

Teaching medical and nursing staff is ongoing to ensure a seamless service to the patients. Attending and presenting at conferences supports the dissemination of evidence based practice, and an annual growth and nutrition audit is ongoing to review the service provided to the unit.

Social workers

Social work support to children with chronic kidney disease and their families is provided by two experienced social workers (1 WTE). Nottingham Children's Renal Unit has two social workers: Suzanne Batte (left) and Lyn Hopkinson (right). They both work part-time (1 WTE together).

Why does the MDT need social workers?

Chronic kidney disease is a life-long condition which has complex psychosocial implications for the child and other family members, which requires long term support. The children’s renal unit covers a wide geographical area and social work support is provided to families on the renal ward, dialysis unit and sometimes in the outpatient clinic. Home visits are also undertaken at key stages during the treatment process.

What is the role of social workers?

The social workers are responsible for a caseload of complex cases and take the lead on providing comprehensive psychosocial assessments regarding the needs of children and their families. A key role for the renal social workers is to help children

with chronic kidney disease and their families adapt to managing the illness within the context of the demands of the

ir daily lives. Home visits can be undertaken to look at the likely impact of starting dialysis, and to consider if peritoneal dialysis can be managed at home or alternatively if a family can cope with travelling to the renal unit for haemodialysis several times a week.

How do home visits work?

Home visits are also undertaken early on to provide support regarding what lies ahead medically. It can be a very difficult time coming to terms with the diagnosis of chronic kidney disease, and the social workers can offer support either over the phone or they can arrange to meet you in the clinics in Nottingham or consider if a home visit is required.

The social workers work closely with a team of specialist renal nuirses. They will sometimes visit families together to focus on key stages of the treatment process such as going on the transplant list and considering live donation as well as looking at dialysis options. However, the key role for the social workers is the overall impact on the child and their family and they recognise that families need time to look at how they manage the emotional wellbeing of all family members and balance this with the demands of work and managing financially and practically.

Can social workers help me apply for benefits?

The social workers can give advice about applying for Disability Living Allowance and Carer's Allowance. Children who require a lot of care at home such as dialysis, feeding via a nasogastric or gastrostomy tube or catheterisation will often meet the criteria for Disability Living Allowance. The social workers can advise families about how to complete the forms. They can also provide information about agencies in the families' local areas that help with completing the forms such as the Citizens' Advice Bureau.

The social workers are not trained benefit advisors but they can advise families about where to obtain help with other benefit applications. Some parents will not be able to continue to work due to the demands of caring for their child with chronic kidney disease. The Citizens' Advice Bureau is often a good starting point for finding out if parents are entitled to apply for benefits such as Income Support, Job Seeker's Allowance or Employment Support Allowance if they have health conditions themselves.

What is the role of social workers in transition to adult kidney units?

Transition to adult renal units is a planned process that involves the renal team working closely with a young person and their family for eventual transition. The social workers are often involved in this process and recognise that this is an important step for the whole family, particularly if they have been attending our unit over many years.

Psychosocial support can also be provided to children admitted to the renal ward with acute kidney injury. Sometimes children and their parents require support associated with the shock and trauma of a very sudden illness. for families on a very low income a hospital admission can cause financial strain and the social workers can assess if they are eligible for assistance from a renal charity.

Will the renal social worker liaise with my child's local social worker?

The social work role requires a broad range of skills. The safety and wellbeing of children and young people is a priority and this requires the social workers to have a sound knowledge of safeguarding issues. They are required to be skilled at assessing the needs of children from a wide range of backgrounds as well as considering the impact on children who have parents with learning difficulties and mental health problems. Regular liaison with other agencies involved with families such as health visitors, schools, local social workers and housing departments ensures that the impact of chronic kidney disease is emphasised and informs ongoing assessment of need.

Suzanne is a member of the BASW Special Interest Group which promotes the work of renal social workers nationally. This group is instrumental in terms of providing peer support, sharing good practice and encouraging members to present their work at national and international conferences. Renal social work is a specialist area, particularly in paediatrics and maintaining this link with other colleagues is vital. Of equal importance is regular professional social work supervision. This is provided on a consultancy basis by a person with many years’ experience as a senior social work manager.

Administrative support

Kirsty Underwood is the senior network administrator and started in the role in June 2018. The role of the network administrator includes co-ordinating local shared-care clinics, the consultants' on-call rota, organising educational meetings and providing administrative support to the network steering group. The network administrator can be contacted on 0115 970 9420

The other secretaries include:

Clare Robinson is the Specialty PA to Dr Christian, Dr Evans and Dr Lunn and the specialty nurses and can be contacted on 0115 924 9924 ext 63832

Abby Conroy is the Specialty PA to Dr Hussain, Dr Mallik, Dr Kim and Dr De and the specialty nurses and can be contacted on 0115 924 9924 ext 62715

Vicky Cancemi the Specialty PA to the paediatric urology consultants and nurses and can be contacted on 0115 924 9924 ext 62615

Clare McEwen is tne Admin Assistant to the Nursing team and can be contacted on 0115 924 9924 ext 62246

All these are supported by a larger team of clerks and clinic prep staff.

Pharmacist

Peter Foxon provides specialist pharmacist support as part of a combined post also supporting Nottingham PICU. His role includes:

Daily review of prescription charts for inpatients on E17

Review of medications for ward attenders and dialysis patients

Providing information on medication use in renal impairment and dialysis

Facilitating the safe introduction of new medication

Liaising with primary care staff and staff in local centres to ensure patients are able to access medication, particularly where an unlicensed preparation is required or a drug is being used off-label

Contributing to the guideline development process

Ensuring the appropriate use of High Cost Drugs, supporting the writing of Individual Funding Requests

Homecare Services are used to dispense medications for transplant recipients.

The Specialist Pharmacist is responsible for maintaining links with Paediatric Pharmacists at local centres. A regular news update covering new guidelines, educational opportunities and topical medicines related issues is sent out to SCC Pharmacists. More specialist information may be found on the pharmacy pages.

Psychologist

There is currently no psychology supprt at Nottingham Children's Hospital. Some of the psychology support needed is picked up through other members of the team, such as play specialists or social workers. Clinical psychologists provide more specialist input when there are significant behavioural problems or fear of painful procedures. We also make use of the liaison psychiatry service and the family therapy that is part of that unit.

Youth worker

TheRenal Youth Development Worker, post, which has been funded by the Kinder Appeal is currently vacant. We are awaiting approval for another 2 year charitably-funded post.

The NUH Youth Service provides support and opportunity for young people aged 11 to 19 years who have long term health conditions and disabilities, along with their siblings. The service offers young people the opportunity to express themselves and try new things; meet other young people; build positive relationships and have fun. The NUH Youth Service's mission statement is to:

recognise young people for who they are and not by their illness or condition

support and encourage young people in helping them become whatever it is in them to be

offer support to enable a smooth transition to adult services.

Engagement with young people includes advice, support, using the youth room; weekly youth club sessions, support programs, Youth Forum; trips and residentials. More information is available on the Young People's Area and NUH youth service website.

Play specialists

The kidney team at Nottingham Children's Hospital has one full time Health Play Specialist, Claire Hardy.

The play specialist role is to provide a welcoming, child friendly environment for all patients and visitors attending the ward/ unit. General play and recreation is provided for children and young people of all ages and abilities, including specialised play programmes for long term patients. The play specialist also provides preparation, distraction, and support for children undergoing procedures, and their families. Techniques used include the provision of specialised play for patients to assist with procedures or treatments, and coping strategies.

The play specialist role also includes the organisation of recreational activities, such as residential trips, visits and parties.

Home and school visits are undertaken to help prepare the children, young people and their siblings for changes in their treatment and care.

Teachers

Education is a vital aspect to care and teachers in the hospital school are key members of the multi-disciplinary team.

Students on the haemodialysis unit are taught from Key Stage 1-5 from a range of educational settings.

Personalised learning is at the heart of everything we do. Every aspect of teaching and support are centred around the students’ academic, medical and emotional needs. We work hard to create a welcoming environment, providing a range of opportunities that would be available in a mainstream school (e.g. Children In Need/ World Book Day/ Christmas Nativity/ Diwali…………..)

Dialysis UnitChildren normally attend the dialysis unit for treatment three days a week and a typical treatment lasts 3-4 hours. We teach students from 10am- 12 noon and 1-3pm. Our primary role is to provide continuity for the individual who will be missing their mainstream provision. For this to work effectively, close liaison with schools is essential. We pride ourselves on the links we maintain with schools and colleges, ensuring that we deliver as effectively as we can the lessons that have been missed. We work alongside the student during their dialysis treatment, aiming to make the sessions fun and enjoyable. Continuous assessment and rigorous record keeping ensure that the students are given many opportunities to reflect on their progress.

Ward E17Lessons take place in our bright and well-equipped classroom or at the bed-side, depending on the individual requirements of our students. Some students may be able to leave the ward to have lessons in the main schoolroom where they can participate in more active sessions (including art, music and cooking). At the start of a student’s stay, we provide appropriate work from our range of up-to-date resources. If the stay extends over a week, we contact the student’s school so that a specific programme of study can be established.

Children's kidney team teaching staff

Karina Williamson, teacher of English

Jenny Collins, primary teacher

Craig Matthews, teacher of English

Education Meetings

Multi-professional meetings on children's kidney disorders take place twice a year. In the spring, there is a nephrouroradiology symposium. There is a theme for each meeting. In the autumn there is a more medically-focussed meeting, again taking one theme per meeting. This meeting also includes the EMEESY annual general meeting. Please click on the relevant previous meeting to open up the programme and options for downloading educational materials.